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February 2015

There are over 8.1 million family caregivers across Canada, yet we are invisible.

How did this happen? Family caregivers are not healthcare professionals or patients. We are not viewed as the source of knowledge and healing or the locus of pain. We are not only unrecognized as a member of a patient’s health care team, but we are also isolated in managing the complex issues that arise during caregiving, and this is why many of us feel invisible.

There are over 8.1 million family caregivers across Canada, yet we are invisible.

How did this happen? Family caregivers are not healthcare professionals or patients. We are not viewed as the source of knowledge and healing or the locus of pain. We are not only unrecognized as a member of a patient’s health care team, but we are also isolated in managing the complex issues that arise during caregiving, and this is why many of us feel invisible.

The shock and impact of diagnosis on family caregivers is often overlooked. We are expected to 'tough it out' in the name of love. We are expected to sharpen our caregiving skills and expertly navigate our patient’s journey through the system. We put our lives and personal ambitions on hold in order to best take care of our loved ones and we forget, or we do not have time, to take care of ourselves – or our other dependents.

Thankfully there have been some recent public discussions on the importance of caring for caregivers. Due to aging baby boomers, changing family structures, and financial pressure on health care systems, Canadian health policy makers have been forced to consider the sustainability of the healthcare system without the services provided by family caregivers and without the money caregivers save for the system. This means there is now a strong economic incentive for the system to provide help and support to family caregivers, or at least for those of us who take care of the elderly. This is a step forward, but it ignores a significant number of family caregivers: parents of sick children, caregivers to patients with mental illness, and caregivers to a spouse. Take me for example: I was 29 years old when my 32-year-old husband was diagnosed with cancer.

Reforming the healthcare system is necessary, and given the budgetary constraints, priorities must be set. Blaming “the system” for ignoring the problems faced by family caregivers is tricky; you then blame everyone and no one. For any adequate and long-lasting change to occur, a change from within is required, such as an attitudinal change toward how we perceive the role of family caregivers. The system can benefit family caregivers and benefit from them, but only if caregivers are accepted as members of health care teams. Providers already know the value of working with caregivers, as we often see with patients who have problems communicating i.e. alzheimer's patients, people with mental illness. In these cases healthcare providers turn to caregivers for help.

How can we start to recognize family caregivers as key players in our healthcare system? We could start by looking to and changing basic definitions, such as the definition of illness.

As English philosopher Havi Carel put it, healthcare professionals tend to see illness “as biological dysfunction” and as “physical facts alone”. In an attempt to change the way healthcare professionals look at patients, and to facilitate the movement toward patients-centricity, she suggests seeing illness “as a way of living, experiencing the world and interacting with other people” or simply as a “life-transforming process”.

Can this alternative definition also lead to recognizing all family caregivers as members of a health team? As a family caregiver, I believe so. I think it is possible to customize Carel’s definition in order to promote the recognition of family caregivers within the healthcare system. Let’s go over the definition again and let’s change the focus to family caregivers. Viewing "illness as a life-transforming process” suggests that a disease not only affects patients but also the people around him or her, and if we accept that “illness as a way of living, experiencing the world and interacting with other people,” then the picture provided by a patient – to the health team – would not be complete without insights provided by his or her family caregiver. This translates to changing behaviors which are deeply embedded in daily healthcare practices. Once recognition happens, the rest will follow; like any other group, the health team has to take care of all its members – including family caregivers!

By Sara Shearkhani

Sara Shearkhani has been a family caregiver to her husband, a cancer patient, since 2012. Before his diagnosis, she was a Ph.D student of Economics, but life after cancer prompted her to switch to health policy and management. She is now a patient and community engagement researcher with the goal of becoming a Ph.D student in the near future.

On January 28th we hosted a seminar led by Sara Shearkhani and Carole Ann Alloway - two family caregivers who care deeply about supporting other caregivers - who shared their insight on the various stages one might experience when becoming a family caregiver. A few themes emerged:

- No one is born a family caregiver, you gradually become one
- The journey of becoming a family caregiver is non-linear, full of uncertainty and you're constantly learning
- If the patient's situation changes, you may experience the stages again
- When you're familiar with the stages ahead, you are better prepared

On January 28th we hosted a seminar led by Sara Shearkhani and Carole Ann Alloway - two family caregivers who care deeply about supporting other caregivers - who shared their insight on the various stages one might experience when becoming a family caregiver. A few themes emerged:

No one is born a family caregiver, you gradually become one

The journey of becoming a family caregiver is non-linear, full of uncertainty and you're constantly learning

If the patient's situation changes, you may experience the stages again

When you're familiar with the stages ahead, you are better prepared

Sara began by sharing her experience as a family caregiver. She revealed some important points about the fundamental changes that can occur when you assume the role of family caregiver: your relationships may change; your identity may change; and the feelings that arise can be complex and difficult to navigate. Sara also emphasized that no one is born a family caregiver; the transition is not linear but continual, and you're constantly learning. The length of each stage and of journey itself differ from one caregiver to another, as the caregiver experience greatly depends on the patient's diagnosis, the patient's personality, the caregiver's personality, the family's dynamic and socioeconomic status, among other things.

Sara's story is unique because she was a newcomer to Canada when she became a caregiver to her husband. The expectations placed on her were very high, as they had few family members to support them and, at her own admission, Sara though she could 'handle it'. She describes this as 'adjusting to the new normal', and soon after came the 'honeymoon phase', which entails feelings of obligation and guilt. Being a family member she felt obligated to agree to all requests from her husband's medical team and family, and she began to feel guilty when she could not perform as needed. For Sara, feelings of isolation set in not long after.

"There are feelings that you can't share with the patient," Sara explained. In her case, "cancer always outweighs depression or stress." She believes that family caregivers receive little sympathy from the provider community, but this is slowly changing.

The stages of caregiving are as follows:

Engaging: In this stage, family caregivers are accepting their new life and role. Patients will come first, and it will stay this way for some time. The caregiver may need to redefine his or her role and relationship with the patient. This is referred to as 'adjusting to the new normal.' In this phase caregivers don't realize their limitations, which can be translated into feelings of guilt and burden later in the journey.

Negotiating: In this stage, family caregivers will begin to negotiate for support from family and friends. This usually leads to conflict in the caregiver's relationships.

Settling: In this stage, where Sara believes she still resides, family caregivers attempt to find balance between their different roles as caregiver and individual. This can be difficult with competing demands.

The stages are different for each family caregiver, and some may be skipped depending on the patient's condition, but Sara believes that we all move through these stages, each moving at his or her own pace.

Carole Ann Alloway, another family caregiver to her husband, ended the evening by sharing her experience. These last few years Carole Ann has been 'negotiating for her own sanity,' as the burden of providing full-time care on top of household duties, social responsibilities and family obligations has been enormous. Carole Ann's story began much like Sara's; she took on the responsibility of caregiving with pride, but changes to their relationship and to her identity were overwhelming. She described how their husband-wife dynamic changed and how she mourns that loss, and how she cannot ask family or friends to help with caregiving as they believe she's 'handling it'. Like Sara, Carole Ann believes that she's still in the 'settling' phase, but since meeting each other almost one year ago, Sara and Carole Ann have become their own self-advocates.

If you're interested in getting in touch with Sara or Carole Ann, email sara.shearkhani@patientscanada.ca. Stay tuned for future meetings on the experiences of family caregivers!

January 2015

Are you or do you know of an unpaid caregiver? Did you know that a caregiver goes through predictable stages as they care for someone? Guest blogger Carole Ann Alloway is a family caregiver who along with her colleague, Sara Shearkhani, have identified some predictable stages that many family caregivers go through. It's our hope that this reflective piece, written from the experience of caregivers, is helpful to you or someone you know.

Are you or do you know of an unpaid caregiver? Did you know that a caregiver goes through predictable stages as they care for someone? When a caregiver first starts out they are in the ‘honeymoon’ or engaging phase. They believe they can look after their patient and easily incorporate all of their other activities around caring for their loved one. Family and friends are relieved to see how well the caregiver is handling everything and make infrequent contact to ask about the patient. After a period of time, the caregiver starts to show signs of stress. They might forget about their own appointments, miss an outing with friends, or put their hobbies away assuming they will return to it later. They might start to miss meals or just grab something quick and unhealthy, not their normal fare. The caregiver will attribute this to being forgetful.

As time moves on, the caregiver will start trying to negotiate. They need some time to themselves, or help with cleaning, shopping, etc. but it’s difficult to ask for help, and since everyone thinks the caregiver is doing everything, friends and family don’t offer. People still call to ask how the patient is doing, but now the caregiver is starting to wonder why no one cares to ask how they are doing. The stress mounts and starts to show in unwelcome ways, like back pain or indigestion.

Caregivers might feel that they are expected to care for their loved one. On top of running a household, the caregiver may be managing medical appointments and, quite often, monitoring the patient for symptoms and questioning everything. Its often that caregivers sacrifice the things that make them who they are, like friends, hobbies and time for themselves, all of which causes personal stress. Unfortunately this stress often bleeds into a person's professional life, forcing many to go on leave, or worse yet, resign.

Patients Canada provides a space for family caregivers to come together, share their experiences and learn ways to advocate for themselves and their loved ones. On January 28th, join us for a seminar on The Stages of Caregiving, led by myself and Sara Shearkhani. Whether you're a caregiver, a patient, a family members or part of the medical community, everyone is welcome!

This guest blog was written by Carole Ann Alloway, Patients Canada member and co-founder of Family Caregivers Voice. Carole Ann is a family caregiver, you can read her story here.

Join us for a conversation on barriers to effective communication, what has worked, and what can be improved within the healthcare system to better support communication between the patient's health care team - family caregivers included.More...

participated in a meeting to plan a Patient Partnership Planning workshop